Frank Deford - Alex: The Life of a Child
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- Book:Alex: The Life of a Child
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- Year:2015
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A fathers moving memoir of cystic fibrosis captures a brave childs legacy as well as the continuing fight against the genetic disease (TheNew York Times).
In 1971 a girl named Alex was born with cystic fibrosis, a degenerative genetic lung disease. Although health-care innovations have improved the life span of CF patients tremendously over the last four decades, the illness remains fatal.
Given only two years to live by her doctors, the imaginative, excitable, and curious little girl battled through painful and frustrating physical-therapy sessions twice daily, as well as regular hospitalizations, bringing joy to the lives of everyone she touched. Despite her setbacks, brave Alex was determined to live life like a typical girlgoing to school, playing with her friends, traveling with her family. Ultimately, however, she succumbed to the disease in 1980 at the age of eight.
Award-winning author Frank Deford, celebrated primarily as a sportswriter, was also a budding novelist and biographer at the time of his daughters birth. Deford kept a journal of Alexs courageous stand against the disease, documenting his familys struggle to cope with and celebrate the daily fight she faced. This book is the result of that journal.
Alex relives the events of those eight years: moments as heartwarming as when Alex recorded herself saying I love you so her brother could listen to her whenever he wanted, and as heartrending as the young girls tragic, dawning realization of her own very tenuous mortality, and her parents difficulty in trying to explain why.
Though Alex is a sad story, it is also one of hope; her greatest wish was that someday a cure would be found. Deford has written a phenomenal memoir about an extraordinary little girl.
In 1971 a girl named Alex was born with cystic fibrosis, a degenerative genetic lung disease. Although health-care innovations have improved the life span of CF patients tremendously over the last four decades, the illness remains fatal.
Given only two years to live by her doctors, the imaginative, excitable, and curious little girl battled through painful and frustrating physical-therapy sessions twice daily, as well as regular hospitalizations, bringing joy to the lives of everyone she touched. Despite her setbacks, brave Alex was determined to live life like a typical girlgoing to school, playing with her friends, traveling with her family. Ultimately, however, she succumbed to the disease in 1980 at the age of eight.
Award-winning author Frank Deford, celebrated primarily as a sportswriter, was also a budding novelist and biographer at the time of his daughters birth. Deford kept a journal of Alexs courageous stand against the disease, documenting his familys struggle to cope with and celebrate the daily fight she faced. This book is the result of that journal.
Alex relives the events of those eight years: moments as heartwarming as when Alex recorded herself saying I love you so her brother could listen to her whenever he wanted, and as heartrending as the young girls tragic, dawning realization of her own very tenuous mortality, and her parents difficulty in trying to explain why.
Though Alex is a sad story, it is also one of hope; her greatest wish was that someday a cure would be found. Deford has written a phenomenal memoir about an extraordinary little girl.
Frank Deford: author's other books
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Frank Deford
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Alex
The Life of a Child
Frank Deford
FOREWORD
The life of Alexandra Deford is a story of courage and sadness its about a young girls battle with cystic fibrosis, the number one genetic killer of children.
The events in Alexs lifetime, are captured by her author-father, Frank Deford, chairman of the board of the Cystic Fibrosis Foundation, in this heartwarming book.
While the toll of cystic fibrosis is tragic, the story of Alex is a story of hope in that one day children wont die of this fatal disease.
In a dynamic sequence of events that spanned the fall of 1985, genetic scientists made amazing advances towards finding the cystic fibrosis gene. Scientists successfully narrowed the search for the fatal gene from the bodys billions of pieces of genetic materials (DNA) to less than one-tenth of one percent of the bodys total DNA. This research breakthrough brings the promise of finding a cure and new research treatments for cystic fibrosis. Thus making cystic fibrosis the polio of the 80s.
As you will read in this book, Alex had a dream that one day her disease would be cured. Thanks to supporters of the CF Foundation, her wish isnt that far away. There is still much to be done before that happy day, but Alex can rest assured that it will be done!
Dear Scarlet,
Now, when youre old enough
to read this, you will know
all about Alex.
Alex barely lived eight years. Thats not long at all. Why, looking back, it seems as if it took her much longer than that just to die. The dying seemed to take forever. But still, even for all that, for all the time I had to prepare myself, when the end finally came, I wouldnt let it. At the last, I denied that Alex could die. We knew she was going to die, knew she had to, knew there was no hope, even knew it was best. But still, I started telling myself that it was a couple weeks away.
Its different, a child dying. It isnt just that children are supposed to keep on living. Imagine being eight years old and dead. It isnt just what everybody always says eitherthat a child dying is unnatural. Its much more than that. Old people die with achievements, memories. Children die with opportunities, dreams. They carry the hopes of all of us when they go off. Probably a childs death is more intolerable for us than for the child. Keep it two weeks away and you have some chance.
Carol and I were actually sitting downstairs, talking about it before going to bed, being straightforward and adult, at precisely that moment when Alex began to die in earnest. Two weeks, I said. I feel now shes got about two weeks to go.
Yes, thats just about what I think, Carol said. Probably sometime in February.
Yeah, I want to spend more time with Chris, getting him ready for it. I think Ill have a long talk with him on Sunday.
And that was the instant when Alex called out. She had been asleep, but she awoke in pain, unable to breathe. Help me! Help me! she cried.
Carol sprang to her feet and dashed up the stairs. I didnt move. I knew what Alex needed and that Carol could provide that, as best she could. Help me! Help me!it was a part of our lives by then. But this time was different as well. I knew that straightaway, as sure as Carol felt it too. It would not be two weeks after all.
It was not even a day. Alex died in her bed the next afternoon, in my arms, holding her mothers hands.
Later, a doctor came and signed the death certificate, which is filed somewhere, and then the people from the funeral parlor. Carol asked them and our friends to wait in another part of the house, and then I picked up Alex from her bed and carried her out of her room and down the stairs for the last time. Carol and Chris walked with me, with Alex. We left together as a family of four.
That night, by myself, I retraced my steps out the front door. It was incredibly bright out. That was not just my imagination. There was not a cloud to block out a single star; the whole sky positively sparkled. I heard later that it had something to do with the moon and a unique atmospheric condition. Possibly; believe what you will. I only saw that it was extraordinary and was sure that it must have something to do with Alex. And so I walked about, staring up at those starry heavens, where she was spending her first night.
And, as I walked, I poured out a bottle of root beer on the lawn all around our house. I dont ever remember Alex caring for root beer one way or the other, but, for some reason, she had asked me, that morning, to go out and get her some. How odd that felt, to go to the store. There were all these other people in the store, going on about their lives, buying things, standing in line, living a Saturday. Alex died on a Saturday. It was so strange, what went on in my mind. I kept thinking there must be something wrong with everybody else in the store, because they werent buying root beer for a child of theirs, dying back at the house, a few blocks away.
So thats why I had the root beer bottle that night, walking around the house, pouring it out. Alex had only managed a few sips before she died, and Id bought her a whole quart bottle. Or a liter. Quart or liter. I dont remember whether there were liters yet, in January 1980. But, anyway, there was a lot left, and I couldnt just put it back in the refrigerator, next to the milk and the orange juice. So, it was in the manner of some consecration that I walked about, spreading what was left of the root beer upon the earth where Alex had played.
It was bitter cold and still, the way most winters nights with clear skies are, and now, finished emptying the bottle, looking up one more time, I suddenly remembered one of my fathers favorite quotations, from Shakespeare. He had recited it to me when I was a boy. It was Juliet, talking of her love:
When he shall die,
Take him and cut him out in little stars,
And he will make the face of heavn so fine
That all the world will be in love with Night
And pay no worship to the garish Sun.
Much as I loved to hear my father say that, I could never really visualize the imagery until that night, when I could see Alex up there, cut out in all those stars. So that is the way the day ended when my child died. I said good night to the stars, put the root beer empty in the trash, and went back into the house where the three of us lived.
Chapter 1
Even now, so long after she died, even now its still difficult to go through all the little objects of her life that she left behind. There is not that much that a child leaves, and Alex lived such a short time: small parts of 1971 and 1980, and all of 1972 through 1979, inclusive. She was born, diagnosed, lived all she could, and died before there was time for her to be laden with all the formal artifactsletters and numbers and citations and all that grown-up bric-a-brac that comes with adult convention and ceremony. But there is not that much for a child. Why, some stranger coming across Alexs stuff would think she must have spent most of her life drawing.
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